Yeah I think it’s, it’s very easy to hide yourself away and think I can’t do this, I can’t do that, I can’t do the other. But at the end of the day it’s only you stopping yourself from doing it. If you’re determined enough, you might have to find ways around doing things. I have a walking stick that I keep in my bag and when I freeze I get the stick out and it gives me the confidence to try and move on and carry on doing what I’m doing. I’m very stubborn and I’m very determined that the disease is not going to beat me, but I’ve also learnt that there are some things that I just cannot do on my own. But I, it’s just very important to just try and do what you can and like I said, don’t let the disease live your life. You live your life with the disease and don’t let it take over your life. You do what you want to do as best you can. I think that’s very important, stay positive, that’s a very important thing, talk to people, stay positive and do whatever you can when you can. I think that’s really important.

What does a bad day involve?

A bad day is when I struggle to get out of bed on a morning, my tablets don’t kick in properly, so I have a lot of freezing and festination, this is where I basically it’s like your feet stick to the floor and you can’t lift them.You’re in risk of falling over because your body wants to move forward but your feet don’t want to come with you.Festination is when you just literally stop and cannot move and then you do very little sort of running steps on the spot which are totally out of control and that’s when you often lose your balance and fall over. I then hopefully have a period of time where my tablets are working quite well and then I tend to rush round doing things I want to do which is probably not always a good thing, and then I start to get what they call dyskinesia, and that is severe involuntary movements which are quite painful because they’re muscle spasms and also they really do tire you out.And also of course it’s very visual so you become very conscious of it when you’re out with other people and the more you try to stop it because you’re conscious, the worse it gets.And then the cycle starts all over again, the tablet starts to wear off, I then start to struggle with movements, all my movements are very slow.I have to think twice as hard to do anything that I do.Movements that would just come naturally to most people, just simple things like writing, putting a key in the door, chopping vegetables, people just do it, oh and walking, people just do it they don’t have to think about it. But I have to think about what I’m doing which is quite a tiring thing and it’s like that most of the time.

Unfortunately with Parkinson’s, depression is also a very common side effect of the actual disease and I am on antidepressants and have been for a while to help me cope with, not only the disease but just the general living with the disease.

Yes I think you go into a state of denial when you’re first diagnosed and you’re adamant that you haven’t got the disease, especially myself because for the first four years they actually thought I might have had MS. Nothing was conclusive enough to point to Parkinson’s and everything was ruled out but there was a possibility of MS. After four years the symptoms progressed and that was when they were able to say it was probably Parkinson’s. And it was then really that I felt very confused. Didn’t really believe the diagnosis because I’d already sort of gone through the stage of trying to accept one diagnosis although it wasn’t confirmed, and I think that’s when I started to go into denial that I didn’t have the disease. And that’s when you start to, just sort of curl up into a bit of a ball and, and not want to face the world. But at the end of the day the disease isn’t going to go away. You’ve got the disease. You have to learn to deal with it.

I don’t think you ever accept the diagnosis but you learn to live with it, and you learn to live your life as best you can. I think it’s very, very important to talk to lots of people, do what you can when you can, and if you can’t, well do it another day. You know, rest when you need to but don’t put off doing things you want to do because there’s always a way round something.

Yes I think, I think you start with denial and I think you, as I’ve said you don’t ever actually accept you’ve got the disease, but fear and anxiety of the future is very much something that goes on in your mind. Every morning you tend to wake up with the thoughts of, you know, what if this happens’ and when might this might happen?’ But you can’t worry about that, you’ve got to just let the disease take its course. We all know that the disease is going to progress. We all know that I will become worse. We all know that gradually I won’t be able to do the things that I can do now.

But worrying about what’s going to happen in the future before it happens, just stops you doing the things you want to do. And I do get frightened, I can’t deny it. I do get very upset. I do get very angry, why me? But at the end of the day nobody’s going to take this disease away from me. I can either curl up in a ball and have no life, or I can get out there and just get on with it and enjoy the life as best I can, which is what I’m determined to do for the sake of myself but also for the family and friends that are around me.

Holidays to me are a great release.I’ve always been determined to enjoy holidays right from the time I was first diagnosed, in fact when I was first diagnosed the first thing I did was went along to the travel agents and booked a holiday to Disneyworld because I was determined to go.And I think you, you know, everybody can go on holiday. You might have to think about things in a more round about way.

When you go through the airports it’s always a good idea when you’re booking your tickets through the airports just to advise them that you have a disability. And we have found, from our experience that they’re very, very helpful. And, you know, they can help you get through the airport without too much hassle. And so it’s always worth being, like I said before, be honest and, you know, letting people know that you do have a disability.And something like Parkinson’s it’s strange because you can look at me at one time and I just look perfectly normal and I’m moving perfectly okay and people must think well there’s nothing wrong with her’ and then an hour later and my medication has worn off and I can hardly put one foot in front of the other. And it’s very difficult to explain to people. You feel like you need a badge, you know, telling people what’s wrong and why you’re like that.But, you know, you do have moments when you cannot move properly and you need to let people know that that can happen, and they can help you, but I’m a great believer in holidays.

I was lucky that although I’ve actually had the disease for ten years it hasn’t until recently really affected what we’ve been able to do. I find that we did a lot of walking and we’ve not been able to walk as far or I’ve become more tired. I did lose a lot of confidence with going out with friends and worried that I wouldn’t be able to walk so far, so tended to decide not to do it. I lost a lot of confidence going out shopping on my own and would always make sure I was with somebody. But I’m beginning to sort of learn that I can do it and I just have to make sure I time it right with my tablets and not do too much really.

In the beginning I’d had a lot of tests and they couldn’t actually confirm the diagnosis. And at one stage the neurologist said to me, it could possibly be MS. You could be in a wheelchair in two years or running a marathon in twenty.I can’t tell you what’s going to happe which was not very nice, very upsetting. And then of course four years later when my symptoms progressed I was then told that again they weren’t, that it wasn’t a conclusive thing, but take this medication away with you and try it And so I found out I had Parkinson’s by looking on the internet and, it wasn’t a nice way to find out that you had a disease.

And I really, then I went back to my GP and asked for a second opinion because I wasn’t convinced that they’d got it right the second time and for a good year or so I kept thinking, No, I haven’t got Parkinson’s. they’re going to tell me I’ve got something else. And so it was a long time before I was able to start taking on board the fact that I did have Parkinson’s disease and how it was going to affect my life. And start to accept the fact that I had to live a life with a disease and taking medication for the rest of my life. And that’s I suppose really when I started to become very depressed.

I didn’t know what was wrong with me so I went to see a GP. He thought it was repetitive strain injury which I didn’t believe so I went back for a second opinion. He then sent me to a neurologist to do many tests. After all these tests they could tell me what I didn’t have but they were unable to confirm a diagnosis and so was basically told to go away and get on with your life and see what happens over the next few years.

In the year 2000 I had a car accident and this had appeared to start a tremor. Over the following year, every time I was under any stress or anxiety I’d start a tremor down my right side. I couldn’t understand what was happening so I went back to my GP who referred me again to a consultant. Again I had a load more tests, again nothing was conclusive. They gave me a tablet to try. I came away and he didn’t tell me what it was actually for so straightaway I looked it up on the internet, then the word Parkinson’s jumped out at me. I didn’t really know anything about Parkinson’s all I knew was of people that were old and sat in the corner of, of a room with a nodding head. I was very frightened, very anxious, very concerned for the future, I didn’t really know where to turn. I didn’t know where to find any extra help.